UB's Rembis is building links within WNY disability community

Michael Rembis is first and foremost a historian. An associate professor of history working in disability research, Rembis is also director of the University at Buffalo’s Center for Disability Studies (UBCDS).

He says addressing disability in its full complexity can promote participation, self-determination and equal citizenship for people living with disabilities in society.

“For me personally and as a historian, I like to ground my scholarship in primary evidence,” he says. “In my everyday life and my teaching, I ground my work in the community, being part of it.”

When Rembis was named associate director of UBCDS in 2010, one of his first goals was to reach people who are living with disabilities throughout Western New York.

“At the center we have focused on community engagement from the beginning,” he says. “We bring in guest speakers and hold conferences and events that involve faculty and students and community members.”

Under Rembis’ leadership, UBCDS has created an oral history project that gathers stories of people who have been institutionalized or had significant experiences with residential institutions and who are now living in the community.

“We would like to encourage people in the wider community to think of disabled individuals on more levels than just their disability or the services they use,” he says.

“In 2011, a group of us came together and formed a not-for-profit organization outside of the university called DEAN — Disability Education and Advocacy Network of WNY — that represents the connection between UB and the community,” he says.

A key goal, he says, is to bring together different organizations in Buffalo, all of whom are doing excellent work in the community and with clients they serve, but are also operating largely within their own individual spheres.

“Silos would be another term to describe it,” Rembis says. “There are people working with individuals with developmental disabilities, others with mental health issues and people with epilepsy or CP (cerebral palsy) — all these different groups and organizations out there are doing good work.”

Rembis notes there are strong self-advocacy networks throughout Western New York. The idea behind DEAN, he adds, is to build connections to encourage collaboration, an exchange of information and innovative ideas, such as sharing events between organizations and groups.

“A first-of-its kind book, ‘(Dis)Integration: Buffalo Poets, Writers, Artists 2017,’ emerged in part out of that oral history project,” Rembis says. “The book is the result of a desire to gather stories, to collect the experiences of people, and also from our work with DEAN as well.

“It was roughly about three years in the making and was a collaborative project from the very beginning, involving a mix of community members and people from the university, including graduate students,” he says. “We received generous financial support from Starlight Studio and People Inc.”

Noting there is a wide range of issues affecting the lives of individuals who are living with a disability in Western New York, Rembis says “(Dis)Integration: Buffalo Poets, Writers, Artists 2017” offers a vehicle for these individuals to express themselves through poetry, prose and visual art.

“We wanted to feature poems, short stories and artwork from those who are living with disabilities throughout our region,” Rembis says. “We received more than 260 submissions. The quality was really high, so we ended up having to be very selective. There was enough artwork and poetry to probably do two books.”

Many of the writers spoke about disability politics and disability rights issues, says Rembis, as well as issues of access and forging an identity — to be acknowledged in society as being a disabled person.

Other poems and artwork describe the lives of those living with disabilities, including such topics as relationships and perceptions, he adds.

“It [the work in the book] is the experience of living in a disabled body,” he explains. “And this is very broadly defined: sensory issues, mobility and things related to chronic or mental illnesses — what some people might call madness.    

“People are more than just their disability,” he stresses. “They lead more complex lives, they are parents, children, aunts and uncles ... they are brothers and sisters ... they work, either part time or full time … they volunteer.

“Individuals living with a disability lead these really rich, interesting lives and oftentimes we kind of think of them only in terms of their disability.”

Among the things DEAN and the book are trying to accomplish, Rembis says, is building community and providing social ways for people with disabilities, their allies and people who provide them services to create support networks.

DEAN did an initial run of 100 copies last fall and sold out within a couple of weeks. There is now a second printing of the book. The $20 price benefits DEAN.

Anyone interested in purchasing a copy can contact Rembis or any member of the DEAN executive board at the organization’s website. There is also a posting with information on the book on the Starlight Studio website.

Rembis says that while there is some thought about doing a second book, there are no immediate plans. Developing a stand-alone website that could showcase the current book, with the poems, short stories and artwork, is a goal, however.

“We are also thinking of maybe doing podcasts … having writers reading their work and artists describing their process and the materials they used to create their art,” he says.

“We are envisioning a website where this work can be archived, where people can post comments, listen to podcasts and that will link to the UBCDS website, the DEAN website and others. Having all of this online will also make it more accessible, which of course is always our goal.”

Rembis says it is important not only to reach out to those who are living with a disability, “but also to create awareness of who they are and what their lives are like, to help foster inclusion and equity with others who are not disabled.”